Defining Pediatric Chronic Critical Illness: A Scoping Review.

OBJECTIVES: Children with chronic critical illness (CCI) are hypothesized to be a high-risk patient population with persistent multiple organ dysfunction and functional morbidities resulting in recurrent or prolonged critical care; however, it is unclear how CCI should be defined. The aim of this scoping review was to evaluate the existing literature for case definitions of pediatric CCI and case definitions of prolonged PICU admission and to explore the methodologies used to derive these definitions. DATA SOURCES: Four electronic databases (Ovid Medline, Embase, CINAHL, and Web of Science) from inception to March 3, 2021. STUDY SELECTION: We included studies that provided a specific case definition for CCI or prolonged PICU admission. Crowdsourcing was used to screen citations independently and in duplicate. A machine-learning algorithm was developed and validated using 6,284 citations assessed in duplicate by trained crowd reviewers. A hybrid of crowdsourcing and machine-learning methods was used to complete the remaining citation screening. DATA EXTRACTION: We extracted details of case definitions, study demographics, participant characteristics, and outcomes assessed. DATA SYNTHESIS: Sixty-seven studies were included. Twelve studies (18%) provided a definition for CCI that included concepts of PICU length of stay (n = 12), medical complexity or chronic conditions (n = 9), recurrent admissions (n = 9), technology dependence (n = 5), and uncertain prognosis (n = 1). Definitions were commonly referenced from another source (n = 6) or opinion-based (n = 5). The remaining 55 studies (82%) provided a definition for prolonged PICU admission, most frequently greater than or equal to 14 (n = 11) or greater than or equal to 28 days (n = 10). Most of these definitions were derived by investigator opinion (n = 24) or statistical method (n = 18). CONCLUSIONS: Pediatric CCI has been variably defined with regard to the concepts of patient complexity and chronicity of critical illness. A consensus definition is needed to advance this emerging and important area of pediatric critical care research.

Dismantling structural racism in nursing research.

Dismantling structural racism in nursing research is key to achieving health equity for populations that experience disproportionate burden of health disparities. Several nursing organizations have advocated for the nursing profession to address structural racism in the discipline and the Future of Nursing 2020 to 2030: Charting a Path to Achieve Health Equity specifically calls for research that addresses equity and social justice. Bold calls to conduct research to address structural racism notwithstanding, what remains less clear are the strategies needed. We propose key considerations for the design of research to address structural racism and offer examples from behavioral and biobehavioral research designed to dismantle structural racism.

Association of Acute Respiratory Failure in Early Childhood With Long-term Neurocognitive Outcomes.

Importance: Approximately 23 700 US children undergo invasive mechanical ventilation for acute respiratory failure annually, with unknown long-term effects on neurocognitive function. Objective: To evaluate neurocognitive outcomes of children who survive pediatric intensive care unit (PICU) hospitalization for acute respiratory failure compared with their biological siblings. Design, Setting, and Participants: Prospective sibling-matched cohort study conducted at 31 US PICUs and associated neuropsychology testing centers. Patients were 8 years or younger with a Pediatric Cerebral Performance Category score of 1 (normal) before PICU admission and less than or equal to 3 (no worse than moderate neurocognitive dysfunction) at PICU discharge, excluding patients with a history of neurocognitive deficits or who were readmitted and underwent mechanical ventilation. Biological siblings were aged 4 to 16 years at testing, with Pediatric Cerebral Performance Category score of 1 and no history of mechanical ventilation or general anesthesia. A total of 121 sibling pairs were enrolled from September 2, 2014, to December 13, 2017, and underwent neurocognitive testing starting March 14, 2015. The date of the final follow-up was November 6, 2018. Exposures: Critical illness and PICU treatment for acute respiratory failure. Main Outcomes and Measures: The primary outcome was IQ, estimated by the age-appropriate Vocabulary and Block Design subtests of the Wechsler Intelligence Scale. Secondary outcomes included measures of attention, processing speed, learning and memory, visuospatial skills, motor skills, language, and executive function. Evaluations occurred 3 to 8 years after hospital discharge. Results: Patients (n = 121; 55 [45%] female patients) underwent PICU care at a median (IQR) age of 1.0 (0.2-3.2) years, received a median (IQR) of 5.5 (3.1-7.7) days of invasive mechanical ventilation, and were tested at a median (IQR) age of 6.6 (5.4-9.1) years. Matched siblings (n = 121; 72 [60%] female siblings) were tested at a median (IQR) age of 8.4 (7.0-10.2) years. Patients had a lower mean estimated IQ than matched siblings (101.5 vs 104.3; mean difference, -2.8 [95% CI, -5.4 to -0.2]). Among secondary outcomes, patients had significantly lower scores than matched siblings on nonverbal memory (mean difference, -0.9 [95% CI, -1.6 to -0.3]), visuospatial skills (mean difference, -0.9 [95% CI, -1.8 to -0.1]), and fine motor control (mean difference, -3.1 [95% CI, -4.9 to -1.4]) and significantly higher scores on processing speed (mean difference, 4.4 [95% CI, 0.2-8.5]). There were no significant differences in the remaining secondary outcomes, including attention, verbal memory, expressive language, and executive function. Conclusions and Relevance: Among children, survival of PICU hospitalization for respiratory failure and discharge without severe cognitive dysfunction was associated with significantly lower subsequent IQ scores compared with matched siblings. However, the magnitude of the difference was small and of uncertain clinical importance.

Bias in Musculoskeletal Pain Management and Bias-Targeted Interventions to Improve Pain Outcomes: A Scoping Review.

Bias in healthcare negatively impacts disparities in care, treatment, and outcomes, especially among minority populations. A scoping review of the literature was performed to provide a deeper understanding of how bias influences musculoskeletal pain and potential effects of bias-targeted interventions on reducing pain disparities, as well as identify gaps and make suggestions for further research in this area. Publications from peer-reviewed journals were searched using the databases PubMed/MEDLINE, PsycINFO, CINAHL, and Scopus, with 18 studies identified. The literature review revealed that clinician-based bias and discrimination worsen pain and disability by reducing access to treatment and increasing patient pain-related injustice, catastrophizing, depression, and perceived stress. In contrast, clinician education and perspective-taking, patient decision tools, and community outreach interventions can help reduce bias and disparities in musculoskeletal pain outcomes. Increasing the diversity of the healthcare workforce should also be a priority. Models of care focused on health equity may provide an ideal framework to reduce bias and provide sustainable improvement in musculoskeletal pain management.

Association of Socioeconomic Status With Postdischarge Pediatric Resource Use and Quality of Life.

OBJECTIVES: Socioeconomic factors may impact healthcare resource use and health-related quality of life, but their association with postcritical illness outcomes is unknown. This study examines the associations between socioeconomic status, resource use, and health-related quality of life in a cohort of children recovering from acute respiratory failure. DESIGN: Secondary analysis of data from the Randomized Evaluation of Sedation Titration for Respiratory Failure clinical trial. SETTING: Thirty-one PICUs. PATIENTS: Children with acute respiratory failure enrolled whose parent/guardians consented for follow-up. MEASUREMENTS AND MAIN RESULTS: Resource use included in-home care, number of healthcare providers, prescribed medications, home medical equipment, emergency department visits, and hospital readmission. Socioeconomic status was estimated by matching residential address to census tract-based median income. Health-related quality of life was measured using age-based parent-report instruments. Resource use interviews with matched census tract data (n = 958) and health-related quality of life questionnaires (n = 750/958) were assessed. Compared with high-income children, low-income children received care from fewer types of healthcare providers (ß = -0.4; p = 0.004), used less newly prescribed medical equipment (odds ratio = 0.4; p < 0.001), and had more emergency department visits (43% vs 33%; p = 0.04). In the youngest cohort (< 2 yr old), low-income children had lower quality of life scores from physical ability (-8.6 points; p = 0.01) and bodily pain/discomfort (+8.2 points; p < 0.05). In addition, health-related quality of life was lower in those who had more healthcare providers and prescribed medications. In older children, health-related quality of life was lower if they had prescribed medications, emergency department visits, or hospital readmission. CONCLUSIONS: Children recovering from acute respiratory failure have ongoing healthcare resource use. Yet, lower income children use less in-home and outpatient services and use more hospital resources. Continued follow-up care, especially in lower income children, may help identify those in need of ongoing healthcare resources and those at-risk for decreased health-related quality of life.

Characterizing Long COVID: Deep Phenotype of a Complex Condition.

BACKGROUND: Numerous publications describe the clinical manifestations of post-acute sequelae of SARS-CoV-2 (PASC or "long COVID"), but they are difficult to integrate because of heterogeneous methods and the lack of a standard for denoting the many phenotypic manifestations. Patient-led studies are of particular importance for understanding the natural history of COVID-19, but integration is hampered because they often use different terms to describe the same symptom or condition. This significant disparity in patient versus clinical characterization motivated the proposed ontological approach to specifying manifestations, which will improve capture and integration of future long COVID studies. METHODS: The Human Phenotype Ontology (HPO) is a widely used standard for exchange and analysis of phenotypic abnormalities in human disease but has not yet been applied to the analysis of COVID-19. FUNDING: We identified 303 articles published before April 29, 2021, curated 59 relevant manuscripts that described clinical manifestations in 81 cohorts three weeks or more following acute COVID-19, and mapped 287 unique clinical findings to HPO terms. We present layperson synonyms and definitions that can be used to link patient self-report questionnaires to standard medical terminology. Long COVID clinical manifestations are not assessed consistently across studies, and most manifestations have been reported with a wide range of synonyms by different authors. Across at least 10 cohorts, authors reported 31 unique clinical features corresponding to HPO terms; the most commonly reported feature was Fatigue (median 45.1%) and the least commonly reported was Nausea (median 3.9%), but the reported percentages varied widely between studies. INTERPRETATION: Translating long COVID manifestations into computable HPO terms will improve analysis, data capture, and classification of long COVID patients. If researchers, clinicians, and patients share a common language, then studies can be compared/pooled more effectively. Furthermore, mapping lay terminology to HPO will help patients assist clinicians and researchers in creating phenotypic characterizations that are computationally accessible, thereby improving the stratification, diagnosis, and treatment of long COVID. FUNDING: U24TR002306; UL1TR001439; P30AG024832; GBMF4552; R01HG010067; UL1TR002535; K23HL128909; UL1TR002389; K99GM145411.

Income-driven socioeconomic status and presenting illness severity in children with acute respiratory failure.

Children living in low socioeconomic communities are vulnerable to poor health outcomes, especially when critically ill. The purpose of this study was to investigate the association between socioeconomic status (SES) and illness severity upon pediatric intensive care unit (PICU) admission in children with acute respiratory failure. This secondary analysis of the multicenter Randomized Evaluation of Sedation Titration for Respiratory Failure clinical trial includes children, 2 weeks to 17 years old, mechanically ventilated for acute respiratory failure; specifically, subjects who had parental consent for follow-up and residential addresses that could be matched with census tracts (n = 2006). Subjects were categorized into quartiles based on income, with a median income of $54,036 for the census tracts represented in the sample. Subjects in the highest income quartile were more likely to be older, non-Hispanic White, and hospitalized for pneumonia. Subjects in the lowest income quartile were more likely to be Black, younger, and hospitalized for asthma or bronchiolitis, to have age-appropriate baseline functional status, and history of prematurity and asthma. After controlling for age group, gender, race, and primary diagnosis, there were no associations between income quartile and either Pediatric Risk of Mortality scores or pediatric acute respiratory distress syndrome. As measured, income-based SES was not associated with illness severity upon PICU admission in this cohort of patients. More robust and reliable methods for measuring SES may help to better explain the mechanisms by which socioeconomic affect critical illness.

Study protocol for a two-center test of a nurse-implemented chronotherapeutic restoring bundle in critically ill children: RESTORE Resilience (R2).

Often, pediatric intensive care environments are not conducive to healing the sick. Critically ill children experience disruptions in their circadian rhythms, which can contribute to delayed recovery and poor outcomes. We aim to test the hypothesis that children managed via RESTORE Resilience (R2), a nurse-implemented chronotherapeutic bundle, will experience restorative circadian rhythms compared to children receiving usual care. In this two-phased, prospective cohort study, two separate pediatric intensive care units in the United Sates will enroll a total of 20 baseline subjects followed by 40 intervention subjects, 6 months to less than 18 years of age, requiring invasive mechanical ventilation. During the intervention phase, we will implement the R2 bundle, which includes: (1) a focused effort to replicate the child's pre-hospitalization daily routine, (2) cycled day-night lighting and sound modulation, (3) minimal yet effective sedation (RESTORE), (4) nighttime fasting with bolus enteral daytime feedings, (5) early progressive mobility (PICU Up!), (6) continuity in nursing care, and (7) parent diaries. Our primary outcome is circadian activity ratio post-extubation. We hypothesize that children receiving R2 will experience restored circadian rhythms as evidenced by decreased nighttime activity while in the PICU. Our exploratory outcomes include salivary melatonin levels; electroencephalogram (EEG) slow-wave activity; R2 feasibility, adherence, and system barriers; levels of patient comfort; exposure to sedative medications; time to physiological stability; and parent perception of being well cared for. This paper describes the design, rationale, and implementation of R2. CLINICALTRIALSGOV IDENTIFIER: NCT04695392.

Racial, ethnic, and socioeconomic disparities in paediatric critical care in the USA.

In an era of tremendous medical advancements, it is important to characterise and address inequities in the provision of health care and in outcomes. There is a large body of evidence describing such disparities by race or ethnicity and socioeconomic position in critically ill adults; however, this important issue has received less attention in children and adolescents (aged ≤21 years). This Review presents a summary of the available evidence on disparities in outcomes in paediatric critical illness in the USA as a result of racism and socioeconomic privilege. The majority of evidence of racial and socioeconomic disparities in paediatric critical care originates from the USA and is retrospective, with only one prospective intervention-based study. Although there is mixed evidence of disparities by race or ethnicity and socioeconomic position in general paediatric intensive care unit admissions and outcomes in the USA, there are striking trends within some disease processes. Notably, there is evidence of disparities in management and outcomes for out-of-hospital cardiac arrest, asthma, severe trauma, sepsis, and oncology, and in families' perceptions of care. Furthermore, there is clear evidence that critical care research is limited by under-enrolment of participants from minority race or ethnicity groups. We advocate for rigorous research standards and increases in the recruitment and enrolment of a diverse range of participants in paediatric critical care research to better understand the disparities observed, including the effects of racism and poverty. A clearer understanding of when, where, and how such disparities affect patients will better enable the development of effective strategies to inform practice, interventions, and policy.